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Does Anyone Like Being Celiac


runningcrazy

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YoloGx Rookie

I agree with many of the above posters. This has forced me to really look at the American Diet. Because my diet was so "limited" (or so I thought) it ended up opening up a variety of yummy food I never considered. I've learned so much about eating organic, non processed food. I'm amazed that so many of my physical symptoms can be completely managed without drugs, just food and exercise. I in my heart believe that most of the population is walking around feeling like crap all the time and calling it normal. Until my body was clean I didn't realize I felt absolutely, well, like crap for probably a good decade. I feel years younger.

So it's totally inconvenient, has made traveling a scary ordeal...but I love feeling good and eating well.

I second that!

Bea


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rdunbar Explorer

I like being celiac in that following this diet I look and feel like I am 15 to 20 years younger than most people my age (61). I also am much more knowledgeable about health which feels good. I already went through a lot of the stuff beginning in my twenties that a lot of people don't face until they are my age.

The final blessing came 3 years ago when I discovered I needed to be free of even trace glutens--which I didn't know about previously. The change in my health for the better was and is remarkable! I feel like I am way ahead of the game in that respect. I now look forward to the rest of my "old age" rather than dreading it like most people in this country. When I look at the average diet I cringe actually. I certainly wouldn't want to eat like most people here do...

Nevertheless, it would be nice to be less reactive to trace amounts of gluten since as it is I get cc'd from trace gluten in the environment at work etc. and have resultant migraines etc. I would rather not deal with. However it still is way better than being sick for one to three months like I used to get all the time...

One benefit actually that I have read about and observed is that it is often the case that people who have celiac and don't eat gluten are more flexible, are more resistant to disease and often live to be older compared to the rest of the population.

Bea

I'm really sensative to trace amounts of gluten as well; after getting serious about removing any expososure I may be getting to t best of my ability for @8 months, I'm finally doing better. I didn't eat wheat or bread for @3 years previously with scant results.

Now I'm worried about my vitamins and supplements containing trace gluten despite it them saying 'no gluten' on the label.

To the OP, no, I don't like being celiac. I know what you mean, though, I certainly get satisfaction from eating no processed and packaged foods, and it's exciting to have hope of healing from all the damage that's been done from poisoning myself for 40 years;

I have dermatitas herpetiformis, and can tell you that no one likes going through having this condition. It's like asking if someone likes to be tortured. It's itchy to the point of intense pain and burning,

as far as the neurological problems I've had, it's definatly not fun either. Just all the mood disorders I've had have been unspeakably disabling and have interfered with my life so much, I can't even entertain the idea of liking it.

I do like finally having some answers about how gluten and my reaction to it have caused so many different problems for me that I didnt even dream were related to each other.

And I'm excited that I'm slowly getting better, and am finding out a little bit what it is to feel okay

Marilyn R Community Regular

I'm glad to have found answers for so many questions about my mental health. I'm happy to be happy again. I'm thrilled that I can laugh at a joke and can care about very basic things again.

I'm happy that something in me isn't always upset (mind, body, bowels, stomach, nerves).

And I'm really happy that things didn't progress. I don't have Lupus or MS or worse.

So, in following your OP, I am happy I know I have it. I miss a few things, but that's life. B) Happier now than before.

UnhappyCoeliac Enthusiast

^^ I know there is a relation to Celiac & MS but comparing them is a little to doomsday and doesnt serve much of a purpose IMO, my doctor and my good friend said genetically they're are still a fair way apart.

No... I'd say anyone saying yes is lieing

Ya being forced to eat a little healthier at some points doesnt out weight the con of all the time effort to research this and all the little pleasured u miss out on.

tennisman Contributor

The health problems I have had from being Celiac have been annoying.

But I kinda like being Celiac as it's a part of who I am, it also makes me more unique, and even though it has been annoying at times I feel lucky to be a Celiac and all the problems that go with it. It's wierd and strange to explain but I do kinda like it lol

Marilyn R Community Regular

I don't want to put a cramp on this post, but hello, MS and celiac has been linked. And celiac disease has been connected with several other autoimmune diseases. There is a definite link between MS and celiac disease.

Please do your homework before throwing forks. Or put a half cup of "shut up" in whatever you're drinking! :P

jenngolightly Contributor

I know I probably sound like a nut, but I kind of enjoy it. I've always been a weird eater, and im also dairy free and vegetarian...I guess its kind of fun for me to be different.

Sure I hate getting weird looks when i bring weird food, or not being able to eat the cake at a party, or having to look stuff up ahead of time, or accidently contaminating myself..(jeez maybe im talking myself out of liking it) But I like to know that i am doing something healthy and i like the challenge of finding/making new foods. Does anyone else relate?

I hate it. I hate always thinking about food. I hate that other people feel bad even though I'm okay when they eat in front of me (I'm gluten-free cf sf df and sugar free). I hate that I always have to carry snacks with me in a BIG bag when my friends get to carry trendy little purses. I hate explaining to people when I go to events and refuse to eat the catered food (while I pull dinner out of my BIG bag).

Maybe it's too soon... it's only been 3 years.


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Nor-TX Enthusiast

No, I absolutely do not like this disease. It has become an invader of my every daily decision. What to bring to work for lunch? What to eat for dinner, for breakfast. I work at a school and there is always food being brought in by parents and teachers. I sit at staff meeting with others at my table munching cookies, cakes, chips, all kinds of foods. Celebrations here involve wraps, sandwiches, lasagna, crackers and cheese, breaded wings etc. I sit with whatever I have brought for myself and the sweet young things wave their goodies in front of my nose or try to tempt me.

Darn goneit, YES, I would love a piece of that chocolate cake or cookie or whatever they have, but I stick to my own food for fear of getting sick.

I have been gluten free for a year and no, it hasn't gotten easier. I buy all the right food, read all the right documentation/cookbooks/magazines but no, things are still very hard for me.

I am facing age 61 along with a total knee replacement and I am scared about the pain, the immobility, my UC flaring, what I will eat at the hospital, at home when I get back... I will have to adjust my Remicade infusions so that there is a longer time between the last infusion, the surgery and the next infusion.

No I am not happy about this disease. As much as I try, I have been cc'd alot and my will sometimes crumbles. Yes I know I am in charge of my body, and what I eat... but jeez... :huh:

i-geek Rookie

I'm not happy about the disease per se, but since autoimmune diseases run on both sides of the family, I'm very glad to have this one rather than Graves disease, diabetes, or rheumatoid arthritis (all possibilities with my genes). I'm hoping that I caught it early enough to stave off the others.

I'm not happy that I have to watch everything I eat and that when I go out with friends I often have to bring my own food while they chow down (and then explain why to everyone), but I'm happy that I can actually go out with them at all instead of being stuck at home with migraines, GI problems and intense fatigue.

Sure, some nights it's really annoying not to be able to stop and grab a pizza for dinner if I don't feel like cooking. But...it's nice to have the energy to cook once again since I always used to enjoy it.

I'm very happy that my usual severe seasonal allergies are now lessened to the point that I can use OTC meds sparingly, if at all. And I'm thrilled to be able to eat dairy again (full serving of ice cream last weekend without a lactase pill and no illness = VICTORY).

Looking for answers Contributor

For the most part, it's become such a way a life that I don't think much about it. Yes, I live very differently than other people my age, but oh well! I do HATE having it when I travel. I also can't eat dairy, nuts or eggs. Getting food in other parts of the world or rural areas in no easy feat and I often get very ill on vacation and come back with acne, bloat and general malaise for weeks.

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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
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      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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